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July 23, 2021
Harold A. Pollack
Dec 6, 2021
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On his way to work recently, one of us (HP) encountered volunteers at his train station in Chicago’s south suburbs. They were distributing Tootsie rolls and collecting donations for Misericordia, Chicago’s most prominent institution serving people with intellectual and developmental disabilities (IDD) on the city’s north side.
Such contributions are needed, particularly in this time of COVID-19. Individuals with IDD face severe risks, with some cohort studies of hospitalized COVID patients finding mortality hazard rate ratios of 10 or higher associated with Down syndrome. Individuals with IDD and their caregivers face other related challenges, including increased functional challenges and depressive symptoms and deterioration in service access and quality associated with COVID-19.
These challenges are not unique to IDD. Many Americans with disabilities endure serious health disparities and unmet service needs, in addition to severe financial distress. Our own work and that of others finds that individuals with disabilities have worse access to care, lower care quality, and worse clinical outcomes, as well as higher rates of poverty and behavioral health and chronic conditions, than their nondisabled peers. In particular, individuals with disabilities have higher rates of functional impairment on activities of daily living (ADLs) and instrumental ADLs (IADLs). This means less ability to live independently and participate in the workforce as well as a greater need for assistance.
Many Americans with disabilities, therefore, rely on a patchwork of safety-net programs to meet their needs and those of family members. An estimated 8.2 million working-age adults have left the workforce due to disability and rely on Social Security Disability Insurance (SSDI); 4.6 million disabled adults aged 18-64 rely on Supplemental Security Income (SSI). Ten million Americans qualify for Medicaid on the basis of disabilities, and 8 million below age 65 with disabilities rely on Medicare for health coverage. In addition, millions of Americans with disabilities who do not qualify for Medicaid or Medicare pay high out-of-pocket costs for medical care and are frequently uninsured.
Individuals with disabilities who receive Medicaid and Medicare endure other barriers, including providers’ refusal to treat them due to low payment rates and related administrative challenges. In many states, Medicaid payment caps on physician visits and inadequate payment for complex visits make providers less willing to see Medicaid patients with disabilities, including those dually eligible for Medicare. Such individuals are less likely to have a usual source of care, less likely to receive needed primary and specialty care, and more likely to face additional barriers at the point of care because many physicians lack training and ability in treating patients with disabilities and report being uncomfortable in treating this population. The end result is frequent referral of patients with disabilities to the emergency department (ED) to treat nonurgent and preventable conditions.
Such deep and comprehensive disparities merit a correspondingly deep and comprehensive response within both the research and policy communities.
A valuable first step would be for the National Institute on Minority Health and Health Disparities (NIMHD) to designate people with disabilities as a recognized health disparity population, and to prioritize related studies for funding. Presently, NIMHD materials specify that “research on disabilities without a primary focus on individuals who belong to [recognized] health disparity populations falls outside of NIMHD’s mission and is not a priority for funding.” This policy decision forecloses a key vehicle for researchers to examine disparities in care access, quality, and outcomes associated with disabilities.
Americans with disabilities are disproportionately poor, rural, and members of racial and ethnic minority groups, and thus face amplified disparities on multiple fronts (see Exhibit 1 here). These realities underscore the uncomfortable, intersectional reality exemplified by those Tootsie rolls with which we opened this essay: Pronounced disparities exist within the disability community itself.
Misericordia provides high-quality services for 600 people. While Medicaid and other public sources provide most of its funding, Misericordia pursues extensive fund-raising. Thanks largely to decades of impressive fund-raising by its long-time Executive Director, Sister Rosemary Connelly, Misericordia’s total assets exceed $750 million, with annual investment income of roughly $20 million. Its donors and benefactors include celebrities, and business and political leaders, some of whom write movingly about the quality and humanity of services provided to their families. A 2019 Chicago Tribune celebration of Misericordia’s annual gala noted that its programs, renovations, and new buildings were made possible through private fundraising. As Sister Connelly observed: “If we depended solely on the government, we certainly would not be the home we are today.”
Of course, most disability service providers do rely on government funding for the majority of their funding. One of us (HP) is guardian of a person with intellectual disabilities, who receives services at another Chicago provider of IDD services serving 650 people. Its assets are roughly $7.5 million, with annual donations of about $1.5 million, and annual investment income of roughly $120,000. Not surprisingly, Misericordia provides more extensive services, and was better positioned to maintain safe programming, continuity of care, and family connection in the long months of lockdown before COVID vaccines became available.
Parents of children with disabilities frequently report that the task requires a legal or social work degree to navigate state assistance systems. Less-advantaged families face corresponding overt or subtle barriers in navigating complex administrative processes to access key services, such as Home and Community-Based Services nominally distributed on the basis of crisis and need.
In addition to designating individuals with disabilities as an NIMHD health disparity population, federal and state policymakers can take additional actions to address these disparities.
First, Medicare and Medicaid payment rates to medical providers and managed care plans should account for functional impairment when setting complex visit rates and plan capitation rates. Although patients with functional impairment require more resources to treat, these realities are often ignored within current payment systems creating corresponding disincentives for providers to care for patients with disabilities.
Second, medical schools and residency programs should adopt curricula that better address clinical, behavioral, social, and cultural issues related to disability.
Third, federal and state governments should target resources to patient navigator programs, to help individuals with disabilities and their families navigate state Medicaid programs, SSI and SSDI eligibility, and school-based services. Although such navigator programs would help families across the income scale, they are especially critical for low-income families.
Fourth, more research is required to understand the causes and consequences of race/ethnic and economic disparities within the disability community, and to assure proper design of Medicaid and other public policies to address these disparities, including transparency regarding how facilities that receive public funds consider family resources in the operation of their waitlists and in other organizational practices.
Social, economic, and health indicators point to Americans with disabilities as a health disparity population. Individuals with disabilities deserve an equal seat at the table to address these disparities in their full complexity and intersectionality, as well as the attention and funding that come with it.
Harold A. Pollack, PhD, is the Helen Ross Professor of Social Service Administration at the University of Chicago. He is faculty codirector of the University of Chicago Crime Lab and the University of Chicago Health Lab. He researches services for severely disadvantaged populations for individuals at the interface between Medicaid and the criminal justice system.
Kenton J. Johnston, PhD, is an Associate Professor of Health Management and Policy at Saint Louis University, in St. Louis, Missouri. His research focuses on Medicare, value-based payment, risk adjustment, and vulnerable patient populations.
Hefei Wen, PhD, is an Assistant Professor in the Division of Health Policy and Insurance Research, Department of Population Medicine, Harvard Medical School and the Harvard Pilgrim Health Care Institute, in Boston, Massachusetts. She is committed to leveraging rigorous quantitative methods to inform health and social policies surrounding the behavioral health issues in the U.S.
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